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Revolutionary sickle cell therapy treatments are available. But at over $1 million, confusion over access persists

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The FDA approved two new gene therapies for sickle cell two months ago. The treatment could be a cure for more than 1,500 Minnesotans with sickle cell disease and millions of people worldwide.

The genetic blood condition causes horrible pain and can lead to deadly health complications such as strokes. People of African descent are more likely to have the gene and the new treatments could address an urgent health equity problem.

But with a price tag of millions of dollars, it’s unclear how or when they will reach people who need them.

Rae Blaylark is the President and CEO of the Sickle Cell Foundation of Minnesota joined MPR News guest host Nina Moini to talk about about the reaction from sickle cell patients in Minnesota, what insurance providers are saying and what it might take for the cost to go down.

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Dr. Roy Kao is an assistant professor of medicine at the University of Minnesota who specializes in gene therapy for sickle cell. He also joined the conversation to explain how the new treatments work, how effective they are, and why they’re so expensive.

Use the audio player above to listen to the full conversation. 

Subscribe to the Minnesota Now podcast on Apple PodcastsGoogle PodcastsSpotify or wherever you get your podcasts.   

We attempt to make transcripts for Minnesota Now available the next business day after a broadcast. When ready they will appear here.

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